Your Replies

  • March 4, 2020 at 10:45 am

    Thank you Jim.

    Caitlin I hope you got some answers.

    February 25, 2020 at 5:25 pm

    Hi Jim,
    Thank you for the many times before you have helped me with information.

    My daughter got sick with CIDP, arachnoiditis, and intracranial hypertension/pseudotumor cerebri in 2016. She’s had low RBCs since before her first IVIG treatment and her RBCs have continued to be low after 41 rounds of IVIG. Her hematocrit was borderline before her first round of IVIG but became low and has stayed low. Her hemoglobin has hovered over borderline to low.

    Her neurologist has never discussed her “anemia” with me, and honestly, I thought it would correct with IVIG treatment because she had a lot of other blood work that corrected itself once she could eat again. (She had a lot of autonomic dysfunction including gastroparesis with her CIDP)

    Her fatigue is still debilitating even though her NCS are much improved, so I’ve been thinking about her anemia.

    Her RBCs are 3.92 million/mm3 ref range 4.2-5.5
    Her Hct 33.4% ref range 37.0-47.0
    Her Hgb 11.5 g/dl ref range 12.0-16.0

    What are your thoughts?
    Are there some guidelines about when to look at bone marrow for a smoldering cancer?

    August 29, 2019 at 9:50 pm

    Yes I meant 1 g/kg thanks for the correction

    We’ve had a consult with an interventional radiologist and her current port can’t be used for plasma exchange.

    Bard makes a double lumen catheter for PLEX and they have a low profile PLEX port in the works but it’s not available yet.

    I think what I’m learning is that while the studies say IVIG and plasmapheresis are equally effective this is only true in the aggregate but individuals sometime respond better to one than the other.

    My daughter had a hyper viscosity Syndrome even before her first round of IVIG, which the IVIG made worse before it made it better…

    I think she would have benefitted from PLEX except that the physicians were afraid of lowering her already low blood pressure if they used PLEX.

    A reasonable concern to be sure but I notice here and on other forums people who have gone into remission have had PLEX followed by IVIG and another agent.

    So it seems to me the best chance for remission lies in using multiple treatment modalities.

    If you switch to PLEX I hope you will post to this thread and share your experience.

    August 6, 2019 at 10:00 am

    Hi Kathy,
    I hope it’s safe to assume you were taken off the drug that caused your GBS. I believe Kenneth Gorson MD , an expert in GBS/CIDP practices in Boston. If steroids are not working to relieve your GBS symptoms perhaps IVIG or plasmapheresis is in order. Obviously yours is a complex case and you need your oncologist to consult with an expert in GBS to plan your therapy. I’m sorry I cannot be of more help to you but I think you might be lucky to be living in Boston where I believe there are experts in GBS.
    Best wishes for your recovery,

    October 6, 2018 at 2:29 pm

    GH I’m glad the flu vaccine does not cause an exacerbation of your CIDP, but youshould fear giving advice one way or another to individuals regarding vaccines. It’s generally accepted that GBS can be triggered by vaccines even though the mechanism by which some people develop GBS or CIDP in response to vaccines has yet to be elucidated. This is why the same government which neither confirms nor denies a mechanism of causation, nevertheless compensates people injured by vaccines. In the NIH report Adverse Events, you will find a case of measles encephalopathy which was triggered multiple times in the same individual as the person completed a series of measles vaccinations. The first two times the individual was told it was merely coincidence the encephalopathy began shortly after administration of the measles vaccine. So this individual continued with the vaccine series after recovery. The final time the individual received the measles vaccine, and developed encephalopathy requiring ICU admission, a doctor with a high degree of suspicion biopsied the brain of the then comatosed individual and through Polymerase Chain Reaction testing identified the strain of measles causing the encephalopathy. The encephalopathy was not caused by a wild type of measles but the strains used in the vaccine the patient was given. Even in this case where there was a smoking gun the report uses the same equivocal language that government can neither confirm nor deny the vaccine caused this case of measles encephalopathy. Clearly in this case we can see that the denial of causality flies in the face of the science. If this victim of measles encephalopathy, caused by vaccine strains that do not exist in the wild, cannot get a government admission of cause and effect, people with GBS and CIDP from vaccines should not hold their breath waiting for a government admission of cause and effect…even if science one day elucidates the mechanism. This language is written for reasons of liability and for public health goals, not to protect individuals who have an autoimmune disease. Each individual needs to weigh the risk versus benefit of each vaccine, the risks of acquiring the disease itself, and the treatments available should the disease be acquired. People who do not have devastating autoimmune diseases can provide herd immunity to those who do.

    May 9, 2018 at 3:30 pm

    Thank you for responding
    My daughter is only 13 and she has autonomic and central nervous system involvement because she has intracranial hypertension
    She got down to below the 1% in weight before the IVIG started enabling her to eat again so I never fail to be annoyed when I read that CIDP doesn’t affect life expectancy …how can it not?
    Knowing what you know now would there be a certain order of port placement you would choose? That is would you start lower on the arms and then work your way up, the to the chest ?

    May 7, 2018 at 2:52 pm

    Oh I’m sorry I confused Cedars Sinai with Mount Sinai

    I have not heard of Northera as a treatment for autonomic CIDP but I have heard of it being used in cases of pure autonomic failure

    So it seems like you are on the right track with pursuing the autonomic testing…and you need a referral to a place where the testing is already up and running.

    You might have better luck finding an autonomic testing clinic near you on a dysautonomia website.

    Maybe your original Neuro who referred you to the neuromuscular neuro would refer you to the up and running testing facility when you tell him how many times your appointment has been put off.

    May 7, 2018 at 12:42 pm

    Dear LMayberry,
    I think people with autoimmune diseases average something like 11 doctors over five years before they get a proper diagnosis and treatment…

    Not having support from friends and family, and economic considerations make this all the more difficult for you…hang in there and reach out to people with your condition here:

    Autonomic Nervous System Testing


    Your heart rate and blood pressure need to be carefully measured sequentially while you are lying down, sitting up, and then standing. The sequence should be timed properly in order to demonstrate that you have orthostatic hypotension (low blood pressure with upright posture)

    Your low blood pressure while standing could be what is called neurally mediated hypotension, which just means that your low blood pressure is being caused by your nerves not working properly.


    The body can sometimes compensate for the orthostatic low blood pressure by making the heart race (tachycardia)…when the body makes this compensation fast enough the person may feel faint or sickly but they won’t actually collapse.

    If the body makes this compensation during the test the diagnosis will be POTS- postural orthostatic tachycardia syndrome rather than neurally mediated hypotension…but both diagnoses fall under the category of dysautonomia I believe.

    Proper hydration and extra salt consumption along with support stockings can help with low blood pressure. Cooler temperatures also help. Swimming in a pool is like being in a full body support hose which allows you to fight the deconditioning which naturally happens when one has NMH/POTS.

    Living in a nursing home you might be being fed a salt restricted diet, but there is more and more news everyday about how salt restriction can hurt the health of seniors. If you have been prescribed blood pressure lowering medication your dosage may need to be adjusted by your physician.

    In people whose low blood pressure is due to demyelination of the autonomic nerves IVIG can work like a miracle.

    I believe Vanderbilt has a dysautonomia clinic and has been conducting clinical trials with IVIG in people with NMH and POTS.

    If I were in your shoes I would call the receptionist at the office where you are supposed to have the autonomic PN and ask to be put on a list to be called in case there is a cancellation. Tell him/her you are willing to come in even at the last minute. Tell him your situation- that the nursing home you are in is costing you $7,500 a month and you are running out of money as your testing for autonomic PN has been put off from January, to April, to July…

    I have asked to be put on a list to be called if there was a cancellation on two occasions- once I got a call back from the receptionist the next day which moved up the appointment a full two months, and on another occasion I actually got the appointment for the following day.

    Even though you have every right to be angry and depressed about your situation remember the receptionist hasn’t been one of the doctors failing to diagnosis and treat you…give him your most cheerful self but tell him the candid truth that your low blood pressure is keeping you in an expensive nursing home that you otherwise would not need to be in and you can’t afford it…even if the receptionist has never had a chronic illness himself he will be able to understand your economic need to be seen sooner than July.

    If you get an NMH/POTS diagnosis maybe you can find a specialist much closer to you than Cedars Sinai…

    … and if you have NMH/POTS but no evidence of CIDP maybe Vanderbilt or Hopkins or the Mayo Clinic in Rochester would be better places for you to make an investment of your time and money…these are the institutions I have run across as doing research into NMH/POTS/Dysautonomia.

    Best of Luck

    May 3, 2018 at 10:36 am

    Hi Valerie,
    I don’t know if you still are on the GBS/CIDP forums but I have a child who had a headache and high opening pressure and critical protein in CSF before her first round of IVIG, after getting her first round of IVIG the headache became intolerable and she was diagnosed with pseudotumor cerebri/intracranial hypertension/papilledema…

    So the long and short of it is I think she had intracranial hypertension that was undiagnosed before her first round of IVIG (because no one took a really good look in her eyes before her first round of IVIG after which we had to take her to the ER and the ER physician finally gave her eyes a good exam and had a neuro ophthamalogist brought onto her treatment team )…

    Each round of IVIG seems to exacerbate her intracranial hypertension at first but then after a few days it actually lessens her headache compared with the constant headache she had for 10 months before she was diagnosed…

    So IVIG for her has been like a step backward and then two steps forward…

    I can hear in your posts your agony and I know what it is to be in your shoes to have a child who needs IVIG for CIDP, but who suffers brain swelling as a side effect which leaves a mother wondering if the IVIG is doing more harm than good…do we risk our child going blind or going paralyzed?

    Our daughter had autonomic CIDP also which gave her low blood pressure, tachycardia and gut paralysis so we knew she couldn’t live with out the IVIG even though almost everything one reads says CIDP is not fatal…I beg to differ…our daughter was below the 1% in weight by the time of her diagnosis and she just was not going to make it if something was not done for her…

    With the exacerbation of her pressure with each round of IVIG I had asked about plasmapheresis as being an option but her neurologists seem fearful of plasmapheresis for a child

    I was wondering if there were things you learned with your son that you might be wiling to share with me, since you are the only mom I’ve found whose child had pseudotumor cerebri with CIDP?

    October 13, 2017 at 11:41 am

    I’m sorry to hear the tests done so far aren’t revealing what the problem is, but that only means the right test hasn’t been done yet, or perhaps the test for what you have hasn’t yet been devised.

    I’m pasting a portion of a published paper below, not because I’m hazarding a guess at what your correct diagnosis might be, but just to point out that often times people with “negative” studies, get better with IVIG treatment.

    Take note that the patient below is a doctor…I have noticed in my reading of a lot of case studies that all the stops are pulled out when a physician is sick…I think the major difference is that when a physician is sick the physician is always believed, and never psychoanalyzed, and when a lay person is sick, and his doctors can’t make a quick diagnosis, the doctors start thinking the patient has a psychological problem.

    I have experienced it personally, and witnessed it both professionally and as a family member of the person who is sick. It’s one of the saddest things in life when a person who is already dealing with a serious, life-altering illness is being blown off as a hypochondriac.

    When some doctors reach the limit of their knowledge they begin psychoanalyzing their patients. The poorer the doctor is, the sooner he starts doing this. When a good doctor reaches the limits of his knowledge he refers you to a doctor he thinks knows more than he does about what he thinks might be your problem.

    Go back to your neuro and give her another chance at bat, if she swings and misses ask her for a referral by telling her you just cannot afford to be missing work because of this thing you’ve got going on.

    Case study: Efficacy of IVIg in the Absence of Conduction Blocks
    SR, a 62-year-old medical practitioner, developed progressive weakness of the right upper limb over a period of 4 months. It began initially in the thumb and the fore finger and progressed to weaken all the fingers and forearm muscles, with mild wasting. At this stage, the left hand also got weaker in a similar pattern. Electrophysiology detected denervation and reinnervation of the distal upper limb muscles with milder forearm involvement. The paraspinal muscles were normal. No conduction blocks were identified on repeated detailed examinations. Anti-GM1 antibody was not detected. A provisional diagnosis of motor neuron disease was made and he underwent physiotherapy. At the end of 1 year and 4 months, he had not developed any bulbar involvement or upper motor neuron signs, and the daily activities were worsening. A trial of IVIg was given with the presumption of MMN without CB, with remarkable improvement in the weakness over 6–8 weeks. He took further courses of maintenance IVIg and remained well for the next 2 years, at which stage he succumbed to a myocardial infarction.

    The case highlights the efficacy of IVIg in the absence of CB and anti-GM1 positivity.

    September 23, 2017 at 5:06 pm

    My daughter got POTS within 2 weeks of her 12 year old vaccinations and 8 months later was diagnosed with CIDP…now that we know what CIDP is we realize she probably had CIDP before the vaccines but the vaccines definitely changed her from having purely motor problems to having severe autonomic problems virtually overnight
    Gareth Parry’s article makes me feel sane in a world of physicians who will not admit the vaccines are related to her POTS, even though they asked me her recent vaccination history immediately after doing her NCS and EMGs